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Telling children about Mummy or Daddy being a GUCH

By Vikki Irwin

Many GUCHs have more than one operation. These can come at various times in our lives, sometimes spread across decades. My last operation was when I was twenty two, eleven years ago. I didn't have Max to think about then. I may need to have another operation in the next ten years, and now I do have him to consider, as well as my eight year old stepdaughter Nyah. How do I prepare them for what my condition may bring in the future?

I have always talked with Max about being a GUCH, and let him know that he was a special baby as I was one of the first waves of survivors who went on to have children. Though Max may have known about mummy's special heart, he didn't really understand what that meant until he got to school age. He then asked more detailed questions about my scar and what it was. Max is also a boy, and boys love gore, so inevitably I have had to field questions on knives, cutting and blood, whilst he touches the top of my scar. When Nyah and her dad came into my life, she was 5.

I have never been bothered by my scar, I wear it with pride and it is often on show. It wasn't long before she asked about it and I explained in very simple terms what had happened. This approach echoes the advice from Tony Cassidy, Health Psychologist and Director of CHILD at Ulster University; "it is important to recognise that every child and every situation will be different in some ways. The important thing is that the information comes at a time when the child understands it, and is not presented in a way that overloads or shocks the child."

Though I understood from a mother's point of view how important it is to have these conversations, I wondered if the dynamic was any different when the GUCH was a father.

I went to see Sue and Simon who have four children (Tom 17, Maddy 14, Nick 12 and Jessica 6). Simon had a mechanical valve fitted when he was 21. I asked them when they first told the children about Simon's operation and condition. They explain; "We've never hidden it, but we also haven't proactively talked about it. It's always been there. It's most evident to them when we are on holiday as they can see the scar." Simon's wife Sue adds, "if we are all together in bed on a Sunday morning, Jess might listen to my heart and say it sounds different to Daddy's. This gives the children a chance to talk about it in an open way that's not forced and serious."

Professor Cassidy agrees and says that "It is best to open up a conversational theme with the child around health, always trying to ensure that the negative content is outweighed by the positive. It is important to be patient and try to recognise when the child is ready to hear the next bit. Children are very perceptive, even from their early years, and often work out things by themselves before the parent gets around to telling them."

It was also interesting to hear from Sue that the children often came to her to talk about their dad, because they didn't want to upset Simon by asking more in-depth questions. Sue was down-to-earth, telling me matter of factly, "let's face it, children are curious". She added, "I am somewhat removed from the emotion of the situation. When he's not involved in the conversation, the kids tend to ask more factual or clinical questions which I can respond to in a way which is not attached to the emotion of it being their father."

I have found that involving Max and Nyah in my condition has only brought us all closer as a family.

Illness is part of life and whether they have a parent with a long term condition or not, children need to understand that most of the time, illness is overcome or managed and shouldn't be perceived as threatening. Talking to your child and always being open and answering questions when they arise can only help their understanding and build a stronger bond between you. Looking at the way Simon and Sue manage their four children, I believe this to be true. Simon has at one stage or another taken all of his children to the regular blood tests he has to have. They like the experience; it's the openness that removes the fear.

Researching for this article, and also speaking to Sue and Simon, has convinced me that after my next appointment, there won't be expectant faces waiting for me at home, as I will be taking them with me.

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